Tuesday, January 24, 2012

New Meds

The seizures continue.

Allie has been put on a high-dose steroid treatment (Prednisone) in addition to a higher dose of her anti-seizure medication (Topamax) in hopes of stopping the seizures now. She is also taking a prescription form of Zantac (an intense antacid) to try to help her sensitive little stomach handle all of the medication. She hates taking all of the pills but is in otherwise very good spirits.

The fear is that these little seizures could be a condition called Infantile Spasms (IS). IS has an awful prognoses if the seizures cannot be controlled, including severe mental retardation. The neurologist says that there are many reasons to think that Allie does not have IS, but it is not something you want to mess around with.

Some of the good signs that this is not IS include:

A late onset of the seizures. IS usually starts in infants between 4-8 months. Allie was 11 months old (2 weeks ago) when we first saw a seizure.

Allie is high-functioning. Her current cognitive development tests right on target for her age. Cognitive delays or declines are usually present with IS.

IS brain behavior is not showing up on EEG. While monitoring the brain waves are not conclusive, the wave pattern that is typically present with IS was not seen in Allie. The unaffected side of her brain had normal-looking wave patterns. The side of her brain that was damaged by the stroke had some spikes, which isn't a good thing, but it is not the same kinds of spikes usually seen with IS.

She is happy. Most IS babies are agitated but Allie is as happy and chipper as can be.

In spite of all of these good signs, the reality is that her seizures look very similar to IS. All we can do now is tackle them as aggressively as possible and hope that we can control them before too much damage is done.

Assuming that the current steroid and anti-seizure cocktail work, Allie will have weekly check ups with her pediatrician to make sure the medications aren't having any noticeable adverse side effects. She will be going in for a 1-hour EEG tomorrow as a quick check up and will be going in for a 23-hour EEG next Monday. We meet with her neurologist and psychiatrist (a physical rehabilitation doctor) after the long EEG.

If the seizures are not gone by next Monday, she will be admitted into the hospital for 3-5 days for more potent steroid injections.

If either of the current or potential steroid treatments work, she will continue with them for 6 weeks.

Allie is also meeting with a cardiologist next Wednesday to get a full workup to see if her heart is in good shape. She had a routine EKG a while back and everything seemed fine but they want to double check.

Lastly, she has another sedated MRI scheduled for Valentine's Day.

The neurologist warned that if the MRI shows an increase in scar tissue around the part of the brain that the stroke damaged, she wants us to meet with a neurosurgeon to talk about the option of surgically removing the damaged portion. I am so not ready to think about brain surgery on my baby. Let's hope that the seizure medication and steroids do their job!

I cannot believe how much our poor little girl has had to go through before her first birthday. She is so strong and we love her so much.

The silver lining (and some perspective) here:

Thank goodness that we have good insurance. If we end up going with the intense steroids, it will cost about $150,000 just for the medication (not including the up to 5 days in the hospital). Every couple of weeks, we get a notification from our insurance company detailing how many thousands of dollars that they have paid on our behalf.

We are so lucky to have access to the most amazing doctors. I was talking with some other parents in the waiting room at our last visit to the Children's Hospital and they had moved to the U.S. so that their children could see the specialists at the hospital.

With the exception of her right arm and now her seizures, Allie is a totally normal kid. She may not be able to crawl and move around as much as she (and we) would like her to but she will get the hang of it eventually. She loves all the normal things, is way happier than many of the other babies we know, is a great eater and self-feeder, doesn't have any allergies, is very socially aware, and is just the cutest darn baby that I have ever seen. Sure, she has her challenges but who doesn't?

Whenever something new and crappy happens, I try to think of all that is going right. Allie will beat the seizures and she will learn to use her arm in a way that works for her. She doesn't have to be perfect in every way because she, as a person, is perfect. Allie is strong and independent and she has a family that loves her and will do anything for her.

One of her therapists sent out an email a while back that warmed my heart. It was addressed to "Team Allie", which in that context included her physical therapist, her occupation therapist, and her speech/cognitive teacher. How many babies have their own team? Hillary Clinton said that "it takes a village", and in Allie's case, she has at least a village worth of people who are rooting for her and helping her on her way. Thank you.